It Is Important to Learn to Listen to Your Body

A huge part of learning to live with myasthenia gravis is figuring out what triggers symptom flare-ups. This is a very personal journey of understanding your body and learning to listen to the subtle cues it sometimes sends to take it easy. These cues can be anything from heavy-feeling eyes, voice or speech symptoms, or even shortness of breath. You must learn to listen to your body.

(Courtesy of Retha De Wet)

One trigger that I know I share with a few myasthenics is heat. This can be related to an increase in sunny weather, or sometimes even environmental heat, like when attempting to use a sauna. I always avoid the sauna, because a body that feels made of solid lead is not exactly an inviting offer. Summertime is very hard for me. I live in Cape Town, South Africa, and the summers here are meant for beach days and hiking, not recovery days in bed. The temperatures tend to reach 40 degrees Celsius (104 F), and I always battle to keep up with my peers in the heat. I walk a little slower, talk a little less, and choose to move around more selectively.

The increase in temperature also tends to emphasize one side effect of Mestinon (pyridostigmine) that is quite challenging to hide from those around you: excessive sweating. Now, I do not mean a glistening forehead and a slightly sweaty upper lip; I am talking about a waterfall exiting all my sweat glands at once and pouring down my face, arms, and legs. I have learned to use extra strength antiperspirant and to carry a handkerchief with me at all times to wipe the sweat off of my forehead and body. I cannot stop taking Mestinon or try not to come into contact with the heat. This will only result in me being a bedbound hermit that slurs her words and looks at everyone through drooping eyelids — and that is no way to approach life.

We tend to learn what triggers our symptoms through experience, at least when we internalize the knowledge. Another trigger that causes me extreme exhaustion and the exacerbation of my symptoms is emotional stress. I have learned that when I am going through a stressful time with my interpersonal relationships, I have to be extremely cautious about how much I intend to take on during this time.

I must say, being quite an empathetic person also adds to the stress of being in an awkward or unnecessary relationship struggle, which in turn worsens my myasthenia gravis symptoms. I attend regular sessions with a psychologist to help me cope with all the extra stress that myasthenia gravis places on relationships. It also helps to hear the opinion of a third party regarding someone who is not treating me fairly or times that I am expecting too much understanding from a person without vocalizing the support that I need from them. It has also taught me that some people will not understand, no matter how much you attempt to enlighten them, and that perhaps it is best if that relationship comes to an end.

I am thankful that my experience with myasthenia gravis over the years has taught me how to anticipate and sometimes avoid bad days. I am appreciative that it has put my relationships through the ultimate test and filtered the unnecessarily draining ones from my life. It all makes the fight worth it. I will never stop fighting. Life is too beautiful.

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